Two more people have made contact with us, two who have themselves also been diagnosed with Mounier-Kuhn Syndrome.
Now we are SIX.
With each new contact, sharing information often becomes enlightening. For instance, take a peak at the comment introduction underneath of our "Hypoxia Altitude Simulation Testing" post.
From commentor "K" leaving a wonderful post of introduction, with that he/she has left two golden nuggets in the wake of posting. For instance, we had never heard of;
"Tracheobronchomalacia", a medical diagnosis strikingly similar to that of MKS. And then, secondly, we had never heard of ;
"Tracheobronchoplasty"; surgical central airway stabilization with posterior tracheobronchial splinting using a polypropylene mesh improves respiratory symptoms, health-related quality of life, and functional status in highly selected patients with severe symptomatic TBM.
Our thanks to "K" for posting these two tidbits of information from the personal story offered. This was great information to add to any MKS patient's portfolio, especially the latter when it comes to seeking a better quality of life when degeneration becomes of serious concern.
For someone like myself, someone who is actively in the hands of an organ transplant surgeon, there are hopeful bits of information for alternative solutions which come our way definitely worth a personal research.
Speaking of appointments to continue tracking degeneration and future possibilities, we attended such an appointment this past week, once again reaffirming the fearful thought of being someone who must endure a double lung transplant. The prospect of such a life saving, yet life threatening operation and recovery, is overwhelming.
Questions on the notepad for the next appointment continue to be jotted down, two at this time new for inquiry are;
- We cannot seem to find whether or not I was tested for a blood testing to check on my "CRP" levels, which is invaluable for seeking levels of inflammation in the body. The normal level is "10" or under, and some folks with respiratory disease can show levels of over "200". When the body fills with additional stressors such as inflammation to extremes, it just becomes one more thing to contend with, and one more thing to create even more concerns over.
- Tracheobronchoplasty is something we've now spent time researching, and though like all surgeries it does sound risky in many ways, the medical data around the internet offers information that four MKS patients have successfully sought this alternative surgery for better quality of life and the ability to have a greater pulmonary function.
(So there are also three more out there somewhere sharing this disease...)
"K" our commentor did mention he took approximately six months for a total recovery and how it has assisted in greater wellness. Others can take from 6-9 months for full recovery from what we've read on this individualized medical surgery.
For further study, here are a few live links below you can click on concerning the topic of Tracheobronchoplasty, that is, if you care to read and research this topic on your own;
